Jacqs Journey...Antidepressant Withdrawal Nightmare

[Jacqs]

Hi. I'm a 55 year old woman who lives in Western Australia, who has been on Escitalopram 20mg per day for about 10 years. I have tried to come off it many times, but never succeeded because of the awful withdrawal symptoms. This time I began this journey by default, getting through the worst of it before realising what was going on and why I was so unwell. Two months down the track I would like to let others know what I have been through, the experiences I have had, with the hope of helping others in their own journey of AD withdrawal. I feel we all need to hear each others' stories so we can gain hope and insight into what is happening to us. Hopefully, I can help at least one person to continue to try and get off these powerful medications. It is not a short story...I don't know how to cut down on the length without leaving out what I feel are important details. So, I hope I don't bore you to tears! :-)

 

My Story Begins…

 

It has been a nightmare! And I’ve discovered I’m not the only one. Googling my different symptoms on a number of occasions, I’ve found out that thousands of people are suffering with similar (and sometimes worse) symptoms than I have experienced, and am still experiencing. I will add to this periodically. My aim? To hopefully help others out there also experiencing what I am. No, I don’t have any magical solutions, or quick-fixes, but I feel it always helps to know you are not alone in what you go through. As you read about the ups and downs I have been through maybe it will help you to keep going in your quest to be free of these powerful drugs. Tomorrow it will be exactly 2 months since I took my last full dose of antidepressant medication. I’m getting there – but it is much slower than I would like…

 

I began this medication about 10 years ago, after becoming clinically depressed after going through a traumatic experience. I have tried to come off it many times during this period, but have always been unsuccessful because of the awful withdrawal symptoms I experienced. I did not know a lot about this then, but this time I feel I am much better informed, through the research I have done and from reading other peoples’ experiences. I know that this time I will succeed!

 

Unfortunately, I also suffer from ME/CFS (used to be called Chronic Fatigue Syndrome) and Fibromyalgia (since 1995), so life is more difficult than a normal healthy person. I must admit, the AD meds. did seem to help with the pain of the Fibromyalgia.

 

Now to my experiences so far… I took my last full dose of AD medication on 6th November 2011. I was on 20mg per day of Escitalopram. It was a Sunday and it was the last tablet in the packet. I planned to renew my prescription the following day, but forgot for a couple of days. Because my mood felt really good, I decided I would see how I go without them. I had been told one should NEVER go off them “cold turkey”, but because my mood and emotions were so stable, and I felt happy, I figured why not give it a go? Unless of course depression set in. It didn’t. I was elated, thinking this is so easy. What I didn’t realise is that withdrawal is not just about changes in mood. It is also a physical thing, which affects your body in a HUGE way! On the Tuesday, I began to feel slightly nauseous, and a little “fluey”. I began to have more frequent bowel movements, which were slightly loose. Wednesday evening strong stomach cramps began in my lower abdomen. I spent most of Wednesday night with frequent trips to the ‘loo – not exactly diarrhoea but looser than normal (sorry to be so explicit, but you may as well know the full facts). Thursday the cramps crept upwards until they were all over my stomach area. On the Friday I renewed my prescription, but still did not take any pills. Naively, I thought I was doing so well because my mood was great. I thought I had food poisoning as the cramps became worse – never connecting this with me coming off antidepressants “cold turkey”. By Saturday I was in excrutiating pain from the stomach cramps. Around 9.30pm Saturday night I seriously considered going to the hospital because the cramps were terrible – the pain was almost up there with childbirth (not quite as bad, but close). In hindsight I realise I should have gone to the hospital. I could not put ANY pressure on my stomach at all as it was even really tender to the touch. Still experiencing frequent and loose bowel movements. I got through the night, and the cramps eased slightly Sunday. Monday they had improved, but were still there, and the nausea had increased. I decided to go to the doctors, suspecting I must have some type of food poisoning. The doctor seemed at a loss as to what was wrong with me. I had no actual diarrhoea, and no vomiting. He took a stool and uring sample and told me to return in a few days to get the results.

 

Sorry, but I’m just too tired to keep writing. I’ll continue as soon as I can. I do want to say though, hang in there. I'm sure it is possible to get off of these powerful drugs!

 

Jacqs

Escitalopram 20mg

[Claudius]

Hello Jacqs,

 

Not to discourage you, but 2 months after a cold turkey is still nothing. I went c/t off Paxil 4 years ago, I got very sick, just as the previous times but wanted to sit it our this time. Only to get much mmuch worse after about 3 months and suffer from the utter hell of protracted w/d for almost 2 years after which the first slight improvements started.

If I could do it over, I would definately choose the 5-10% reduction rule. And the longer you wait after c/t, the bigger the chance of a new adverse reaction after restarting and the slammer the chance of stabilizing again on the same dose.

I am sure the moderators will chime in soon but I would seriously consider to reinstate and taper the right way!

[Altostrata]

Hi, Jacqs. Thank you for adding your story. As you say, by sharing this information, we help each other.

 

It sounds like you are off escitalopram for just about 2 months now? What are your current symptoms?

[Jacqs]

Thanks for your responses. No, I am not yet totally off the Escitalopram. I am down to taking 5mg about every 10 days, when the brain zaps get too bad. Within two or three hours of taking the 1/4 tablet the brain zaps go away. I take on board what you are saying about completely going "cold turkey". When I realised what was wrong with me, I did go back onto the meds, albeit at 1/2, then 1/4 the dose. Maybe I have spaced them out too quickly?? Any input gratefully received, bearing in mind you will need to see my new post, where I continue with my story, which will give you where I am at now. Thanks so much for your input.

Jacqs

[Altostrata]

Jacqs, have you been having brain zaps for 2 months? Do you have any other symptoms?

 

Generally, it's not a good idea to take these medications occasionally. Your nervous system needs stability to heal.

 

What kind of dose are you taking now -- 5mg? You might try taking 5mg every day for a while and see if the brain zaps and other symptoms stop, then taper more slowly using the liquid preparation.

[Jacqs]

Antidepressant Withdrawal Nightmare - My Story Continues...

 

OK... so I had to wait a few days for the results of the stool and urine samples, still thinking I had some type of food poisoning. My mood and mental state was still really good. In the meantime the awful "brain zaps"/ "brain shocks"/ "brain shivers" / "head shocks" began! These were electric shock type feelings going up from the back of my neck up into my brain. For anyone who has ever had them you know how awful and annoying they can be. I also heard someone describe than as "like a camera shutter going off inside your brain". I can relate to that, but would have to add "with an electric shock feeling at the same time".

 

By the Monday night (day 8 off meds.) the brain zaps were so frequent and severe I could hardly stand it. So I went on the internet and Googled up "electric shock feelings in the brain". I was confronted with pages and pages and pages of people talking about these symptoms, and all the other symptoms I had been experiencing, plus more - and they were all under the heading of Antidepressant Withdrawal Discontinuation Symptoms or Syndrome. I was stunned!!!! I did not have food poisoning at all - I'd been having AD withdrawals. Because my mood had been so good I thought I was doing really well coming of my meds. Not realising all the physical things I'd been experiencing were a direct result of coming of my meds. "cold turkey". Foolish, stupid, so dumb!!!

 

On the Tuesday (day 9 - 15th November 2011), after not having any medication since 6th November, I took 1/2 a pill - 10mg of my meds. Escitalopram, because I could no longer stand the symptoms. Even though the stomach cramps had abated, were not so severe, they were still there. After realising what was going on, I thought it safer to taper off. However, because I felt I had been through the worst of it all, I decided to do it quicker than what was probably sensible. I figured it could not get much worse than what I'd been going through. After taking the 1/2 tablet (10mg) my symptoms disappeared within approximately two or so hours. Confirmation of diagnosis - AD withdrawals.

 

On Wednesday (day 9) I took 1/4 tablet, 5mg.

Thursday (day 10) 5mg.

Friday I took none. I got a few cramps in the lower abdomen, but not for long. This day I went to the doctors for the results of my stool and urine samples - knowing they would come back fine. As expected they were all ok. I told my doctor what I'd been going through, and she told me I was lucky I did not have a seizure!!! I was shocked, asking was that possible? She said, rare, but possible. Oh my goodness - what a total idiot I had been!!! I still can't believe I did not put two and two together. Because my mood was still so GOOD I did not connect the two!!!

 

Saturday - 1/4 tablet (5mg)

Sunday 20th November (day 14) took none

Monday (day 15) took none. I had a few tiny stomach cramps. In the afternoon the brain zaps began, but were bearable.

Tuesday (day 16) took 5mg

Wed. took none

Thursday took none

Friday took none

Saturday (day 20) I took 5mg (1/4 tablet) because the brain zaps were awful and I was running to the toilet a lot with loose bowel movements.

I took none until

Tuesday 29 November (day 23) - 5mg

None until

Sunday (day 28) - Ended up taking 1/2 a tablet (10mg) as the pain in my neck and spine was awful.

 

I have suffered from neck and spinal problems for years and years (even before going onto ADs). While on the ADs the pain eased a LOT! But now I have cut down so much the pain has been almost unbearable sometimes. I have read that ADs are sometimes given to people for chronic pain. What a bummer!!! Now I've got to deal with this as well. I took 10mg because I just wanted the pain to go away! It eased but has not gone away since about day 7 after stopping full dose of ADs.

 

Thursday 8th Dec. Day 32 - 5mg

 

Fri. 9th Dec. - First day of feeling "down". My mood began to be affected, but not that bad.

 

Sun.11th Dec. - 5mg

 

Fri. 16th Dec. - 5mg - Bad neck pain, brain zap. Began to feel really IRRITABLE!!!

 

No pills until

Tues. 27th Dec. Day 52 - Brain zaps bad! Frequent bowel movements over last 4 or 5 days. Felt "down", overwhelmed. Bad neck pain every day with no letup. Feeling I want to withdraw from any stress. Overwhelmed by events in life.

 

Wed. 28th Dec - Day 53 - I'm struggling! Brain zaps driving me crazy. Can't sleep after about 4 hours. Am exhausted. In LOTS of pain from my neck area. Stressed - don't know how I am going to cope with visitors for a few days. Feeling very isolated and alone in all this. Stomach not normal. Took 1/4 tablet (5mg) early morning. IMPROVED after a couple of hours.

 

Tues. 3rd Jan. 2012 - Day 59 - Brain zaps began again. Also been very angry and irritable inside - for no reason. Body & muscles achey. (Looking back now I know I should have taken more meds. but tried to push through)

 

Wed. 4th Jan. Day 60 - Feeling very down. Brain zaps. Really angry inside - irritable (7 days since last 5mg tab.)

 

Thurs. 5th Jan. Day 61 - Anger and irritability gone (for the first time in ages I don't feel angry). Still getting brain zaps though.

 

Fri. 6th Jan. Day 62 - Anger still gone. Getting lots of brain zaps and am achey. Read online about AD Discontinuation Syndrome maybe going on for months or years if you come off too quickly. That scared me!!! So I took 1/4 pill (5mg). Brain zaps disappeared after two or three hours.

 

Sat. 7th Jan. Day 63 - I actually feel pretty normal today - no anger, nor irritability. Mood good. My muscles ache a lot and my neck is very sore - but I used to have that before I ever went on the AD meds.

 

I will take on board what I have read now, and as soon as I begin getting any symptoms (brain zaps especially) I will take 5mg. I won't try and push through it any more.

 

Will keep you updated...

[Jacqs]

No, the brain zaps are not continual. They go once I take 5mg of meds. but return any time from 7 days onwards after that. In the past I've tried to push through it, but after reading what you just wrote I won't do that. When they return I will take another 5mg. I don't want to go back to taking 5mg every day as I feel I'm actually FINALLY getting somehwere. As you will read in my second post, the anger and irritability I had has gone, and my mood is mainly good, and stays good for quite a few days. It was when I pushed past the 7 day mark that my symptoms got really bad - anger, low mood, brain zaps, etc. However, if you think I am being silly by continuing to space them out please tell me. But please bear in mind, my symptoms do disappear for about a week, and I feel I would be going "backwards" if I begin taking them every day, having come this far. What do you think?

[renee]

hi there i am one the same medication and have gone through exatly what u are going through.IM TELLING U U HAVE GONE DOWN WAY TO FAST.I would take 5mg everyday for a month or more.Do not miss days u r just screwing up your poor brain more.This is one of the strongest antidepreaasnts out there!Take care renee

[Altostrata]

Jacqs, I merged your two topics. It's one to a customer in the Intro forum.

 

If I were you, I'd take the medication consistently, every day. The zaps that show up after 7 days are a signal from your nervous system that all is not well, although in some ways you are feeling better.

 

While it may not seem necessary now, you have only the one nervous system. It's best to treat it with kid gloves for a few months rather than have months and months of symptoms later.

 

How about trying 2.5mg every day for a month? Then taper from there. We advocate 10% drops every month. If zaps do not show up at 2.5mg for a month, you may be able to go faster than that.

[Jacqs]

Thanks so much for everyones' input - I really appreciate it. But now I am freaking out!!! I definitely don't want to wreck my nervous system any more than it is already damaged anyway. So I will heed the advice given. Even though there is a part of me that feels I will be going "backwards" I am going to take 5mg every day for one month. I thought about going 2.5mg every day, but am beginning to wonder if that is still too fast after seeing Renee's comment. But what is your advice from there on? After the month, then what do I do? Go down to 2.5mg every day for one month? I really look forward to your advice. Gosh, I never knew it would take so long to wean off these drugs. The doctors never telll you all this!

[Altostrata]

I'd try 2.5mg for a week. If that seems to keep symptoms at bay, stay there for two months.

 

If it doesn't alleviate the symptoms, go up to 5mg.

 

For a very gradual taper, we recommend a 10% reduction of the current dose per month. If you're taking 5mg, that would be 4.5mg, then 4.05mg, then 3.65mg, etc.

 

Yes, it is very slow and the decrements are very small. The idea is to sneak the drug off gradually without your nervous system registering a change has been made.

[Jacqs]

OK, will do. Thanks so much for your input and advice! Will start on this today, and keep everyone updated of how I'm going.

[peggy]

Jacqs, I can relate so well to your thought that you don't want to go backwards - i felt like this too - 3 or 4 years ago... if i had gone back to a small dose then and then reduced slowly, then i might be off today..Instead, i stayed off, got quite sick, had to go on to a much higher dose and then did it all again!!!! This time i am taking it much slower and feeling much better for it.

[Jacqs]

Thanks Peggy, I appreciate your advice. I'm going to take on board what everyone is saying and go slower. I'll go back to taking tabs. every day and reduce a lot slower. I definitely don't want to wreck my nervous system. I've just been SO naive - but then no-one tells you about all this. I'm so glad I stumbled across this site. Where are you at now Peggy?

[renee]

HI Jacqs, how r u doing?Ive been on this **** for six years.I was going through a really bad time in life and couldnt sleep and was having terrible anxitey attacks.So a docter told me i was depressed and was given the drug.It worked great at first.I felt calm and no more axitey!But over the next few yeas i put on 35 pounds.Never have i weighed so much.The docter told me it was me not the pills.I craved carbs and wine!I new something was wrong.When i went online hundreds of storys of other peolple had gained alot of weight too.I found a new docter who confirmed the weight gain was from the drug!I tried many times to come off.Once cold turkey, that was pure hell.A few times weaning but going to fast.EVERYTIME I would go back on and 3 different docters told me i was one of those people who needed it for life.I beleived them until i found this site.Thank god!Ive gone from 20 mg to 15 to 10 in a month.Way to fast!So when i found this site i was having terrible withdrawel as usalle.Brain z aps weird dreams bad sleeps really really irritated at all peolple dizzy crying crazy!So i went back to 15 and in one day all the withdral left!So ive been here at 15 for a month and just today im going down to 12.5 and plan to stay for a month.I want of this stuff like yesterday but i know for me i have to be very patient and go slow.Even if i could get down to 10mg have the dose I would be very happy.But i do hope to get off them totally.Any ways just thought i would share some of my story with u.I am a 42 year old female i live in canada about an hour from edmonton alberta a big city there.Its so cool we can share and talk with others all over the world.take care Renee

[peggy]

Where are you at now Peggy?

 

I am down to 34mf effexor - which is a little less than 1/4 of the dose that i spent most of my 13 years on!!! and i feel very good. It is very hard for me not to speed up the reductions - i suffer little physical withdrawal symptoms - it's not until i am off a few weeks that anxiety and depression set in.

[Jacqs]

Thanks Renee and Peggy for your very welcome input. Yes, I absolutely love technology - if it wasn't for this I would feel so very alone and isolated in what I am going through. Whereas having read about other peoples' stories, and corresponding on this site, I realise that what I am experiencing is very common amongst some people trying to come off these meds. It's wonderful to be able to share experiences and offer advice, and great that it can come from anywhere in the world. I,too, put on lots of weight when I went on these meds. My whole life my weight was very stable and I was quite thin. But once I began taking the ADs I put on about 15kg (approx. 33lbs) - a huge amount for me. About 90% of people I know who are on ADs have put on heaps of weight...and can't get it off. So, again, my faith in what I am told by doctors is given another battering. I realise they have very little knowledge about these drugs, only knowing what they are told by the pharmaceutical companies - and they obviously only tell them what they want them to hear. I know this sounds very cynical, but I guess I've become that with them over the years. Firstly when I was trying to find out what was wrong with me (for 5 years, until diagnosed) when I had ME/CFS, and now regarding ADs. I have had a lot more help and good advice from Naturopaths over the last 10 years than from doctors. I know doctors have their place, and are very necessary for certain things, but I have learnt their knowledge is very limited, and very one-tracked. Anyway, I didn't mean to rant... Sorry!

 

Thank you all again!!!

[alexjuice]

Hello Jacqs,

 

I think that the advice here tends to be conservative because almost everyone here has had a taste (or a monster helping) of a nightmare that almost no doctors have ever experienced. The penalty for going too slow is far lesser than the one for going to fast. So while it may seem like it would be better to just 'get it over with', these drugs are novel to our nervous systems and the best course of action is counterintuitive to the way we usually react to a poison or toxin.

 

However, by taking a more cautious path you you'll reach your goal with less likelihood of long term issues (we here have endured long term issues and try to protect others from this fate as best as possible) and less misery in the short term as well.

 

Alex

 

ps - I agree with your thoughts about the internet. Thanks goodness we, from far flung spots on the planet, can all converse like we share the room... :-)

[Jacqs]

Thanks Alex. I really do appreciate all the advice I have been given. If I hadn't come across this site, I think I would probably have tried to push through the awful symptoms, and gone WAY too quickly in trying to get off these drugs, unaware of the damage I'd be doing to my nervous system - the possible consequence being long-term damage and the misery of awful withdrawal symptoms. Having listened to all the advice on here, I do feel a lot better about going much slower, and am now prepared to be much more patient than I was before. I certainly don't want to cause any damage to myself, so if it means a few more months (or more) of slow tapering, then I'll do it. Before finding this site, I thought my withdrawal of these drugs was already slow, thinking I should have been completely off them by now. How wrong I was!!!

[Jacqs]

Thought I'd give you an update on how I'm going. It's been one month tomorrow since I began taking 2.5mg every day. At first I felt ok, but I've been gradually becoming more "down". The last week or two it seems to be almost every day that I feel this way. I couldn't say I am totally depressed, but am definitely low in mood, feeling "flat". One good thing is I am no longer having the physical symptoms I had before, such as brain zaps, stomach cramps etc., so I'm pleased about that. However, I do have an anxious feeling in the pit of my stomach when I wake up. This seems to become less as the day goes on. I am not actually anxious about anything, this is purely a physical thing.

 

I'd appreciate any advice as to whether the low moods will eventually disappear. Do I keep going as I am? Or should I up my dosage? I'd hate to have to go back to 5mg again. Is it likely that the low moods will go the longer I keep taking the 2.5mg every day? Any advice or comments will be greatly appreciated. Thanks!!!

[Altostrata]

It's a good sign the physical symptoms have gone away since you've been taking 2.5mg.

 

My guess is your current symptoms are a cumulation of your prior too-fast withdrawal. Since you're experiencing excessive activation in the morning, I would not take more escitalopram. It's an activating drug.

 

Perhaps it's time to start very, very carefully reducing dosage, maybe at 5%. Can you get liquid escitalopram?

 

If not, you can cut up tablets and weigh smaller doses with a digital scale.

 

Also, Please put your withdrawal history in your signature so we can better follow your progress.

[Jacqs]

Thanks for your reply Altostrata. If I begin to lower my dose now, won't the low mood get worse? If I keep taking 2.5mg for another month, will the mild depression improve? I'm a bit confused as to how lowering my dose even further will be a good thing seeing I'm feeling mildly depressed. My thoughts are that if I keep going as I am, will my body eventually make more serotonin, therefore improving my mood??? Is that how it works? I've been told the lowest dosage in tablet form is 10mg, which I have. I now cut them into 1/4's which is 2.5mg doses. They are already small pills, and once I've cut them, they are tiny, so I doubt I would be able to cut them smaller than I am now. I will ring my pharmacist and find out if I am able to get Escitalopram in liquid form, for when I reduce my dose even further.

 

Look forward to your advice/comments...

[Altostrata]

After being on escitalopram for 10 years, it is unlikely you are experiencing relapse. Your brain has been thoroughly changed.

 

The low mood is most likely a withdrawal symptom from too-fast reduction. Since you've already set withdrawal syndrome in motion, my guess is you will need to cope with this very common withdrawal symptom. Many of us are doing this. Here are some tips http://survivingantidepressants.org/index.php?/topic/846-change-the-channel-dealing-with-cognitive-symptoms/page__p__7274__hl__%2Bchange+%2Bchannel__fromsearch__1#entry7274

 

You could try to increase your dosage to 5mg, see if that helps, then stabilize for a month and taper gradually from there. If increasing makes your anxiety worse, you know that's the wrong direction to go.

 

Don't try to puzzle out the serotonin aspect. You never had a serotonin imbalance to begin with. That is a myth. The escitalopram has changed the way your whole nervous system works. Serotonin is only one of dozens of hormones affected. It will take some time for your nervous system balance to go back to normal -- that's what recovery from withdrawal is about.

[Jacqs]

Thanks again. I will try the "changing the channel" trick - sounds good. The more I think about it, I'd rather not up my dose at this stage. I think I can cope with what's happening at the moment. So will this low mood eventually lift?

[peggy]

So will this low mood eventually lift?

 

I am hoping yes for you as well as me Jacqs!